Lupus Advocates from Across the Country Make an Impact at Lupus Foundation of America Digital Lupus Advocacy Summit

The Lupus Foundation of America’s 2022 Digital Lupus Advocacy Summit, which took place June 27-29, united thousands of lupus advocates from across the country to learn from experts in the lupus field about the latest in lupus research, advocacy and care, and included advocating to members of Congress to join the fight against this terrible disease.

During hundreds of phone and video meetings, and within thousands of emails and social media messages, advocates urged members of Congress to support policies that will improve access to high-quality health care, including:

• The Safe Step Act (HR 2163/S 464), which would prohibit dangerous step therapy, or “fail first” policies, and allow people with lupus timely access to the medications prescribed by their doctor;
• The HELP Copays Act (HR 5801), legislation to ban so-called “co-pay accumulators” and allow the financial assistance many people receive to count towards their health plan’s cost-sharing requirements, including their deductible
• Establishing an out-of-pocket cap and a smoothing mechanism in Medicare Part D to limit patient costs and allow them to spread costs over the course of the year.

Timely access to quality care, including the latest treatments for lupus, is critical for people living with the disease. Lupus patients and their physicians must have the ability to make decisions that meet their medical needs and are not dictated by policies that increase patient costs and limit choice. Insurance company tactics like step therapy and copay accumulator programs create needless delays and affordability concerns that can and do lead people with lupus to miss treatments, or worse, forgo treatment altogether. Affordability is similarly a concern in Medicare Part D, whose 48 million beneficiaries often face high costs without any out-of-pocket cap or the ability to spread high payments over the year.

Additionally, advocates emphasized to their members of Congress the importance of funding lupus research and education programs in fiscal year 2023.

Shannon Lee, who is living with lupus and serves as the Lupus Foundation of America Southern California Region Advocacy co-chair and is attending her fourth Summit shared, "Lupus impacts everyone differently. In order to improve our individual situations, we must actively participate in solutions that address the many challenges presented by this debilitating disease. The Foundation’s Advocacy Summit provides us with the platform to learn, connect and advocate for ourselves, including advocating for support from our members of Congress. Our voices at the Summit can aid in improving care not only for ourselves, but for those yet to be diagnosed."

“The Lupus Foundation of America Digital Lupus Advocacy Summit brings together the largest gathering of people with lupus and provides them with an immersive experience where they can learn about new lupus treatments on the horizon as well as important resources and support services that can help them live a better life with lupus. The Summit also empowers each advocate to use their voice and reach out to their members of Congress to urge them to support policies that increase funding for lupus research and education programs, and improve access to high-quality healthcare,” shared Stevan W. Gibson, president & CEO, Lupus Foundation of America.

In addition to the support of our donors and Board members for helping to make the 2022 Digital Lupus Advocacy Summit possible, we greatly appreciate the unrestricted grants from the following organizations: AstraZeneca, Aurinia Pharmaceuticals, Bristol Myers Squib, Exagen, Genentech, GlaxoSmithKline, Horizon Therapeutics, PhRMA.